You Must Deconstruct to Reconstruct Your Life!

I use to wonder if I would die from this Fibromyalgia Syndrome I have? Fibromyalgia in itself is not an autoimmune disease. An autoimmune disease is when your immune system attacks your healthy cells by mistake, you suffer from inflammation and chronic pain. Some autoimmune conditions even cause death. Fibromyalgia is not this. Fibromyalgia is considered a lifelong central nervous system disorder. It is chronic meaning you will have it for the rest of your life. You live with the pain and the co-existing conditions, but it will probably not kill you. In fact, the number one killer of people with fibromyalgia is suicide.

I have had fibromyalgia since 1998. I was a passenger in a car accident. I experience chronic pain, chronic fatigue, insomnia, clinical depression, post-concussion headaches, severe anxiety, cognitive impairments and digestive issues just about every day of my life since that car accident. Who wouldn’t feel like ending the pain? Some days suicide seems like the right choice. Once you’ve made up your mind, these irrational thoughts become rational. You have decided on a plan and are damn proud of it. Relief washes over you. You feel happy! Finally, you feel like you are in control! But up until now, luckily, something always stops you…

Honestly, I don’t want your pity, your medical advice, or your employment advice. If I hear; ‘get out of your own head,’ ‘I know a person who recovered from fibromyalgia,’ or ‘just volunteer, you’ll feel better’ one more time I swear I will scream! But I do. I hear those bits of advice frequently. I hear these things from people, I thought, knewwhat I was going through. Obviously not.

By the way, people expect volunteers to show up! I don’t even know if I’ll be able to put together a full sentence on any given day let alone keep a promise to volunteer for a specific frame of time…

I have arrived at a place in my life where I just don’t give a damn what you think because I have to live in this body, not you. You have no idea what I have had to endure until you have walked a mile in my shoes, which I doubt you could stand for 10 minutes.

I read about a man who has fibromyalgia talk about deconstructing your life to reassemble it in a way that addresses your limitations. I have never read a better description of what a person with fibromyalgia has to complete to live some resemblance of a normal life. There are chemical changes in a person’s fibromyalgia brain. These chemicals tell the brain to fire random pain signals as we can’t maintain a feeling of well-being. Our bodies are kept in a constant ‘fight, flight, or freeze’ mode. This results in on-going pain, cognitive impairments, weaker immunity, digestive issues, poor sleep, low energy, and the list goes on… The introspection it takes to deconstruct, then reconstruct your life is painful and takes time. But you do it, you face it. You have to address this chronic disease and your very real limitations because of it.

In the end, people in your life do not deserve to be collateral damage. So, after a few years, you stop with all the doctors, all the tests, all the programs, and all the alternative treatments. You start putting together what works for you. No one can do it for you! I can’t, your mother can’t, your partner can’t. If you are expecting them to help you in this process, they just are not equipped to do so. Eventually, you will stop reporting your daily hurdles to everyone around you. You will get in the right frame of mind, and you will just begin. The double-edged sword that comes with a chronic illness is you don’t want advice, but you get it. No one can help you, even though you want them to.

Finally, my advice to you!(If you want it…) Get professional mental health help, this journey of deconstructing so you can reconstruct is no joke. Join a support group, find one that suits your needs. Find something, anything that you enjoy but works the brain. Adult coloring, drawing, crocheting, reading, crossword puzzles, jigsaw puzzles, go to YouTube and learn something. (I’m still trying to learn to crochet left-handed!) Your process for the rest is all up to you. My hope for you is that you are mentally prepared and supported throughout your journey with fibromyalgia.

I know, that i know nothing about fibromyalgia, but i think anyone with any illness has to have the courage to face it alone, as no one gets any illness , especially if they dont have it. My mum is not that well, she looks well if you look at her face, but no one understands what is going on inside.. i learnt that one years ago. Someone can be by your side but not know it all and i am aware of that, when i am with mum, try to be tgere recognuse her tiredness and even if i am tired i try to be up beat cause her tiredness is worse than mine..

Thank you Bella. It sounds like you are just what your mom needs! Not showing what you really feel like on the inside can be a blessing or a curse. At times I’m glad I can’t be picked out of a crowd, but at doctor appointments… the specialist, the therapist, and the like, I wish they could really see my disease. But that is not to be! So, it’s up to me to get to where I need to be and enjoy this life! Of course, putting together my tribe on the way. My best to you and to your mum! Thanks, Bella.

Kim this was such a powerful and courageous post! You are an incredibly strong and determined woman and you do share so much wisdom with everyone. It is not easy having to live life with illness that is just so frustrating, but you handle it with determination and strength!!!

I try! I do all that I can to achieve my best life with this disease. No joke, deconstructing your entire life as you’re reconstructing. Takes practice and a few do- overs. But well spent time for ensuring you reach a quality of life that allows you “maximum painless momentum!” Thank you, Alyssa!

I do think you do amazing handling your illness. I was just talking to my step father who has Parkinson’s Disease. I was preaching to him to stay active, which he doesn’t. I told him the only time we can ever truly fail ourselves is if we give up!
I love your thoughts about maximizing painless momentum! We all deserve as much painless moments we can get!

Thank you! Sometimes we have to do something that seems like an activity~ very much more for men; mowing, tree or shrub trimming, some gardening, even sweeping. Just a little trick to keep up your sleeve! My dad loves to sweep… amazing how much help I need sweeping! I call my dad😉. You could eat off my garage floor! Definitely ‘maximize painless momentum’ on all fronts!!!

I know you can. Little by little! You can always get my book/journal, it lays out options for you to build on, mirroring my journey. In the end you do the choosing! No matter what, you got this lady! I’m sure of it!💜💜💜

You absolutely have my vote! Yes, I’m published, The Shadow Boxers, Fighting Fibromyalgia, your personal journal.. it offers option and you pick what you think will work for you! Plus, wonderful stories and excerpts from many fibromyalgia warriors making their choices and describing their experiences! Great women! This journal also prompts you to write YOUR VERY OWN story. I believe this book will help many figure out their own path towards living their best life with their disease. If you decide, it’s only $10. You can get in on Amazon or my blog! Keep posting Wendi! I learn from you too!💜💜💜

My dearest Kim,
This is your best post yet, for me. I REALLY needed to hear this and you touched me in many ways with this post. I absolutely recognize the stages you shared and it helps me not to feel so out of control or alone. I need to deconstruct. I’m in the process of giving up on doctors now. Thank you a thousand times over for all that you share and do to help us fellow warriors through your journey. You are one awesome chick and I am forever indebted to you and so proud to call you my friend.

You are really telling it like it is. I think I have had Fibro about the same time as you and this is also my journey with it. You have written what I could not even verbalise and that is powerful good juju. Despite the fact that each day I generally rise to the blessings of feeling positive and an intentional purpose; my reserves still get low from this thing they call Fibro. Life gets messy, our heads get fuzzy, and the spark within us can grow dim. When I need good Ju Ju, I’ll come back here. Thank you.

We do indeed need good juju! We may not alway be able to call on our reserves so we must find better, smarter, more fulfilling ways to make each moment count! So nice of you to visit and I look forward to the next!